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Question about ED recovery

User
Posted 21 Mar 2021 at 12:22

Dear All,

I had nerve-sparing radical prostatectomy last December, so a bit longer than three months. Pathology report confirmed localised disease T2B, no invasion of surrounding tissues. MRI and CT confirmed N0 M0. I am waiting for my first PSA test. I am 54, active, slim and with no other health issues. 

Recovery from surgery is going well. Incontinence is improving, I am using a Tena shield during the day, nothing at night. I continue doing the PFE.  I am taking 20mg tadalafil twice a week for ED. 

I have a couple of questions:

- has anyone got to the point where no shields or pads are required during the day? Eg is this achievable after 6-12 months post surgery?

- although I notice an incipient erection now (I could not notice anything for the first 3-4 weeks post-surgery), this is not enough for intercourse. I suppose things are improving as I notice changes when getting intimate with my wife, but I am not sure. Can anyone tell me how the recovery of the ED happened? Was it a progressive recovery, starting with small changes, incipient erections, etc? And how long until you could get proper erections again?

Many thanks!!

 

 

 

User
Posted 22 Mar 2021 at 18:27

Hi Francij1 

Thanks  for your comments. 
I have leaked sometimes when having orgasms. I find it very helpful to empty completely the bladder before events. Even without erections yet, or with just incipient erections, the orgasm is very pleasurable, and I am very grateful for it!

Good suggestion about the ring. I will try!

thanks again to all participants! It really helps to share your experiences. 

User
Posted 31 Mar 2021 at 09:07

Originally Posted by: Online Community Member

Dear All,

I had nerve-sparing radical prostatectomy last December...Can anyone tell me how the recovery of the ED happened? Was it a progressive recovery, starting with small changes, incipient erections, etc? And how long until you could get proper erections again?

HenryBB exactly the questions I was asking! I am now 13 months post surgery and my erections are getting noticeably better. My wife and I had our first penetrative sex with literally NO mechanical or chemical aids at the weekend. Looking back over the last year, offering a few experiences and milestones as examples and no more than that:

* My recovery was progressive, starting with small changes, achingly slow

* For me it actually got worse for the first 3 months after surgery. I had about 75% erectile function a few weeks after surgery, but just about nothing in Months 3 and 4. It was so scary to hug my wife and have literally no movement down there. 

* Before the end of Month 4 I discovered the vacuum pump and that gave me huge comfort that at least I was able to keep the tissues healthy by artificially inflating erections - and they felt good. The books don't point out how much more sensitive a penis is when erect than flaccid.

* PDE5 drugs didn't work for me - and I know they do for lots of others.

* After a few months of pumping and experimenting I started to work out how a combination of cock ring and stimulation could get me back up to something approaching hard - and eventually get fully hard just in the moment of orgasm. 

* What was scary was that the changes were so small. I would have the above experience and think "it's better" only to realise there was still almost no brain-penis connection.

* Then I got help from pelvic floor specialist physios and fine tuned my pelvic floor exercises. Slowly from about month 6 to 10 there began to be the slightest tingles, then some swelling, then I would feel like I was getting hard nocturnal erections - only to find if I actually checked down there it was still soft, just slightly swollen. I now know that these were really positive signs of life!

* By about month 10 my wife and I had figured out how to incorporate all this awkwardness into our lovemaking. She would stroke me while I did my pelvic floor exercises (it really helps to do them with at least a partial erection - closer to the objective). On good days I would be hard enough to penetrate her so long as I wore a very tight cock ring after using the pump.

* Be prepared to have very low endurance - what can really freak a man out is to finally get "in there" only to fade within a minute or two. It can be depressing to lose that firmness and along with it a lot of the sensation, ending up "pushing a piece of rope." Let go of attachment to "finishing" and focus on the pleasurable sensations and lovemaking.

* In month 13 my natural endurance is up to about 5 minutes. What is so weird is that I can see it will take about a month per minute or two of added endurance! (I can go as long as we like if I wear a very tight cock ring but that tends to hurt after a while.)

Lots of detail here - I hope you find it useful. Know it won't be exactly the same for you, but I really wished somebody could have answered the questions you ask, when I was at the stage you are at,

Warm regards and best wishes, Mish

User
Posted 31 Mar 2021 at 10:16

Hi Mish,

thanks a lot for your detailed email. I really appreciate it, as you have outlined very well your journey. This is very helpful indeed. 
I am delighted to hear you are recovering steadily, which is great. 
I an due to the 6 months review in May and want to discuss about the pumps with my surgeon. 
Thanks  again and have a good Easter!

User
Posted 31 Mar 2021 at 16:25

You are doing extremely well. I have a lot of experience. I had RP 10 years ago. Be positive, keep doing the right things and as everyone will tell you everyone is different. Be patient and do not rush things.

Considering your age and depending on the the skill of the surgeon your ED will keep improving and erections will come back, if not I am a shining example of what you can achieve, yes I am boasting with good reason!   My ED did not improve and considering my age I decided to use the pump and life is great with unintended benefits: Erections on demand, at my age that is a bonus; we are delighted. I am 99% continent but use a small pad to  catch drips when my wife hugs and/or kisses me any time any where!!  With luck and a loving wife you have many years of happiness.

Wish you well.

User
Posted 31 Mar 2021 at 20:57
Don't forget a simple durex cock ring - fixes the endurance problem a treat.
User
Posted 01 Apr 2021 at 12:04
Dear Bill63

What I have gained from working with pelvic floor physio experts includes the following:

* Distinguish not just between back, middle and front parts of the pelvic floor, but for ED start paying attention to the rather subtler muscles that specifically support erection.

* Include what I can only call "cock twitching" which is what we used to be able to do in the shower with a half-erect penis, where you consciously twitch it upwards. I started with 10, now doing 30 reps.

* The most useful advice, which was difficult to follow, was to perform the above, as well as all the exercises you refer to

(a) in a variety of positions lying, sitting, standing and including the position you usually are in when making love

(b) practice them with at least a partial erection.

I mean, where are we ED suffers supposed to find the erection to practice with??

The solution my wife and I came up with is a nice partnership. I use the vacuum pump to create the erection, and she takes on the job of keeping it at least half-way "up" while I am going through those Pelvic floor exercise cycles* you refer to.

We do it as part of our bedtime cuddles - after the pumping, she continues to stimulate my penis with her hand, while I wear a cock ring for extra support. Over time, I truly believe this is supporting the reconnection of my brain and penile nerves to support natural erectile function. In the last couple of months I have been able to move to looser cock rings and sometimes no ring at all.

* I think the exercises are best described in Craig Allingham's book Prostate Recovery Map - Men's Action Plan available from https://prostaterecoverymap.com/

User
Posted 02 Apr 2021 at 10:00
Thanks very much Mish. It's a shame Urologists and or ED Nurses don't give such information.

Cheers

Bill

Show Most Thanked Posts
User
Posted 21 Mar 2021 at 16:21

Hi Henry,

Looks like you are doing everything fine.  Everyone is so different.  I was dry in 48 hrs , ED work in progress, I got to your situation possibly around 3 years..

A good post to peruse..  see below

https://community.prostatecanceruk.org/posts/t10993-Erecting-the-Erection---Medication

Pump can not be underestimated, however at your pace, may not be required at all.  

Can you clarify ? Have you had 6 week PSA test post op. and awaiting result/milestone review or not even had a test.

Keep PPE going, however don't overwork . My bladder control was maybe luck or surgeon having a great day...  You have a single sphincter not 2 now, and obviously the body needs time to adjust. Don't over do it however you can try stopping and starting mid stream, try and attempt to have more control.   Measure total output as most probably shows improvement which you may not be aware of. Ie try and reinforce positives and progress etc.  Lots of info on here..  

See my profile for more information etc.

 

 All the very best

Gordon 

Edited by member 21 Mar 2021 at 16:31  | Reason: Not specified

User
Posted 21 Mar 2021 at 17:29

I was more or less continent following the removal of my supra-pubic catheter, ten days post-op.

On the downside, I have a totally flaccid and truncated penis, and in my Christmas card to my surgeon and his pet robot, I ask every year which one of them nicked the 2” off my dick!

Neither have yet to cough up to say where it went....

They do say it can take up to two years for your erectile nerves to recover from what was savage surgery, so hang (😂😂😂) in there. You might try 5mg Tadalafil once a day.

I would say that as there is some sensation there already, you are in with a chance.

Best of luck.

Cheers, John.

Edited by member 21 Mar 2021 at 17:30  | Reason: Not specified

User
Posted 21 Mar 2021 at 17:36

Hi Gordon and John,

Thanks  for the info, I really appreciate it. 

I had the PSA test but not at 6 weeks but nearly 12 weeks. I had my first review 6 weeks post-surgery with surgeon but he told me to wait a few more weeks before first PSA. Next review is beginning of May and the surgeon will have the PSA results. 

I will discuss with surgeon in May about the pump. I am happy to try. I still have enough 20 mg tadalafil for over two months. 

I fully agree with you about not overdoing the PFE. Just a few weeks ago I started leaking a bit more, mostly in the evenings or when going for long walks and tired. I reduced the frequency of the PFE and I am better again. 

Many thanks!

 

 

User
Posted 21 Mar 2021 at 17:50

Hi Henry,
Good questions.  Yep, every case is different and you may have seen good advice in several threads here.  The vacuum pump has been a big winner for me too, so I can't answer without it.

I won't answer regarding incontinence, as I've been super-lucky on that score.  In fact, I've been exceptionally lucky all round so far, but I'll go on anyway!  

I'm also 54, had the op 54 weeks ago, PCa localised, double nerve sparing (lucky).  

My short answer to the ED question is - the significant progress has felt like it came in a bit of a rush, but only after putting the groundwork in..  the longer version is

- 7th March 2020 - wheeled into surgery

- 7th Oct - collected vacuum pump and replace Sildenafil with Tadalafil once a week or "as needed"

- 7th Jan, 8th Jan, 9th Jan - woke with nocturnal erections, hurrah!  I credit the Tadalafil taken on the 6th, and sleeping under a heavy blanket 😄

Since when, it's felt like progress every month, though I've used the pump much less.  Even in March, the ? 40% full erection the Friday Tadalafil gives me has become more like 50% of the maximum and suddenly enough to have sex without the devices (lucky, again), through to Sunday.  Not that we have tried that ...

Anyway, I'm counting my blessings so far, obviously.

I'm sure the rush of progress is psychological as well as physical - just the feeling of desire and seeing an erection rise in a natural way again one year post-op is a boost to the ego for sure (even if it's drug-induced!)

I can only hope it continues for a while. 

All the very best for your recovery, KC

RP 07.03.20, PSA 4.1, Gleason 3+4=7 

User
Posted 21 Mar 2021 at 18:56

Hi Henry,

Yes PFE..I just saw my typo lol..PPE.. .. .  Maybe a side effect of the Oxford vaccine....  .. 

Thanks for update.. 

User
Posted 22 Mar 2021 at 09:45

Hi Henry, 

You're making great progress on both fronts. 

ED wise, I am 16 months post op and erections aren't 100% yet but I managed penetration at 8 months. For me, recovery has been slow and a bit intermittent, sometimes with noticeable gains, sometimes recovery seems to plateau. I had my first semi the morning of my TWOC, then barely any stirrings for what seemed like weeks. 

I think keeping the intimacy going is the way forward as stimulation definitely helps. 

Good luck with your recovery. 

Kev.

User
Posted 22 Mar 2021 at 13:17

Many thanks Kev. Agree, recovery is not linear but on stages, eg improvement-plateau phases. 
Hope you keep on recovering!!

 

User
Posted 22 Mar 2021 at 16:32
Don't be surprised if you get leaks during arousal, I was never told about this aspect of an RP and it was certainly a problem for me in the early days.

Mine has got better but I ain't bomb proof even after 5 years.

Another good reason to get a simple durex cock ring, slip it on at the start of activity and it helps keep you continent and hard! Those features seem to be most appreciated by all concerned!

User
Posted 22 Mar 2021 at 18:27

Hi Francij1 

Thanks  for your comments. 
I have leaked sometimes when having orgasms. I find it very helpful to empty completely the bladder before events. Even without erections yet, or with just incipient erections, the orgasm is very pleasurable, and I am very grateful for it!

Good suggestion about the ring. I will try!

thanks again to all participants! It really helps to share your experiences. 

User
Posted 23 Mar 2021 at 16:23

You have had many useful replies. You can see everyone is different. I hope my experience encourages you and your partner to remain positive and with luck you will get there one way or another.

I had RP 10 years ago. It took two months for 99% continence - I still use a small pad for leaks when bending down or when my wife makes any affectionate moves!  Before the surgery my erections were beginning to be difficult to achieve because of my age. Following surgery I was getting erections but not of much use!  Viagra etc had no effect.  Having investigated all options my wife (a vital person for the recovery of our sex life) and we decided to go for the pump and have continued to have sex as much as before if not more (boasting!).  The use of vacuum pumps to achieve erections is underrated. There are many benefits: Erections on demand, if you have lost length due to surgery it is excellent at regaining your youthfulness, no leaks. But it requires patience, a lot of practice and above all a loving and caring wife/partner.

Keep your spirits up and the rest will follow with a little bit of luck.

User
Posted 23 Mar 2021 at 17:33
And a close shave so you can get the rings off
User
Posted 23 Mar 2021 at 18:42

Hi Pratap,

Thanks  for your message and advice. Wise words indeed!

Yoyr advice is well noted as well as that of other participants. I will continue trying with tadalafil until next review and the ring (shave included!) then move to the pump.  

Many thanks to everyone  

 

User
Posted 26 Mar 2021 at 15:02

You are doing very well; your age is on your side.

I am much older than you and had surgery 10 years ago. All is well in all departments although have to use pump which has had unintended benefit at my age - erections on demand.

I still use a small pad during the day because if I kneel I tend to drip a little.

Keep positive.

 

 

User
Posted 31 Mar 2021 at 09:07

Originally Posted by: Online Community Member

Dear All,

I had nerve-sparing radical prostatectomy last December...Can anyone tell me how the recovery of the ED happened? Was it a progressive recovery, starting with small changes, incipient erections, etc? And how long until you could get proper erections again?

HenryBB exactly the questions I was asking! I am now 13 months post surgery and my erections are getting noticeably better. My wife and I had our first penetrative sex with literally NO mechanical or chemical aids at the weekend. Looking back over the last year, offering a few experiences and milestones as examples and no more than that:

* My recovery was progressive, starting with small changes, achingly slow

* For me it actually got worse for the first 3 months after surgery. I had about 75% erectile function a few weeks after surgery, but just about nothing in Months 3 and 4. It was so scary to hug my wife and have literally no movement down there. 

* Before the end of Month 4 I discovered the vacuum pump and that gave me huge comfort that at least I was able to keep the tissues healthy by artificially inflating erections - and they felt good. The books don't point out how much more sensitive a penis is when erect than flaccid.

* PDE5 drugs didn't work for me - and I know they do for lots of others.

* After a few months of pumping and experimenting I started to work out how a combination of cock ring and stimulation could get me back up to something approaching hard - and eventually get fully hard just in the moment of orgasm. 

* What was scary was that the changes were so small. I would have the above experience and think "it's better" only to realise there was still almost no brain-penis connection.

* Then I got help from pelvic floor specialist physios and fine tuned my pelvic floor exercises. Slowly from about month 6 to 10 there began to be the slightest tingles, then some swelling, then I would feel like I was getting hard nocturnal erections - only to find if I actually checked down there it was still soft, just slightly swollen. I now know that these were really positive signs of life!

* By about month 10 my wife and I had figured out how to incorporate all this awkwardness into our lovemaking. She would stroke me while I did my pelvic floor exercises (it really helps to do them with at least a partial erection - closer to the objective). On good days I would be hard enough to penetrate her so long as I wore a very tight cock ring after using the pump.

* Be prepared to have very low endurance - what can really freak a man out is to finally get "in there" only to fade within a minute or two. It can be depressing to lose that firmness and along with it a lot of the sensation, ending up "pushing a piece of rope." Let go of attachment to "finishing" and focus on the pleasurable sensations and lovemaking.

* In month 13 my natural endurance is up to about 5 minutes. What is so weird is that I can see it will take about a month per minute or two of added endurance! (I can go as long as we like if I wear a very tight cock ring but that tends to hurt after a while.)

Lots of detail here - I hope you find it useful. Know it won't be exactly the same for you, but I really wished somebody could have answered the questions you ask, when I was at the stage you are at,

Warm regards and best wishes, Mish

User
Posted 31 Mar 2021 at 10:16

Hi Mish,

thanks a lot for your detailed email. I really appreciate it, as you have outlined very well your journey. This is very helpful indeed. 
I am delighted to hear you are recovering steadily, which is great. 
I an due to the 6 months review in May and want to discuss about the pumps with my surgeon. 
Thanks  again and have a good Easter!

User
Posted 31 Mar 2021 at 16:25

You are doing extremely well. I have a lot of experience. I had RP 10 years ago. Be positive, keep doing the right things and as everyone will tell you everyone is different. Be patient and do not rush things.

Considering your age and depending on the the skill of the surgeon your ED will keep improving and erections will come back, if not I am a shining example of what you can achieve, yes I am boasting with good reason!   My ED did not improve and considering my age I decided to use the pump and life is great with unintended benefits: Erections on demand, at my age that is a bonus; we are delighted. I am 99% continent but use a small pad to  catch drips when my wife hugs and/or kisses me any time any where!!  With luck and a loving wife you have many years of happiness.

Wish you well.

User
Posted 31 Mar 2021 at 20:57
Don't forget a simple durex cock ring - fixes the endurance problem a treat.
User
Posted 01 Apr 2021 at 10:49
Quote:

 

* Then I got help from pelvic floor specialist physios and fine tuned my pelvic floor exercises. 

 

Mish

Did you get shown any PFEs for ED that are different to the basic long slow holds and short crunches for continance?

Anyone know of any please?

Cheers

Bill

 

 

 

 

 

 

User
Posted 01 Apr 2021 at 12:04
Dear Bill63

What I have gained from working with pelvic floor physio experts includes the following:

* Distinguish not just between back, middle and front parts of the pelvic floor, but for ED start paying attention to the rather subtler muscles that specifically support erection.

* Include what I can only call "cock twitching" which is what we used to be able to do in the shower with a half-erect penis, where you consciously twitch it upwards. I started with 10, now doing 30 reps.

* The most useful advice, which was difficult to follow, was to perform the above, as well as all the exercises you refer to

(a) in a variety of positions lying, sitting, standing and including the position you usually are in when making love

(b) practice them with at least a partial erection.

I mean, where are we ED suffers supposed to find the erection to practice with??

The solution my wife and I came up with is a nice partnership. I use the vacuum pump to create the erection, and she takes on the job of keeping it at least half-way "up" while I am going through those Pelvic floor exercise cycles* you refer to.

We do it as part of our bedtime cuddles - after the pumping, she continues to stimulate my penis with her hand, while I wear a cock ring for extra support. Over time, I truly believe this is supporting the reconnection of my brain and penile nerves to support natural erectile function. In the last couple of months I have been able to move to looser cock rings and sometimes no ring at all.

* I think the exercises are best described in Craig Allingham's book Prostate Recovery Map - Men's Action Plan available from https://prostaterecoverymap.com/

User
Posted 02 Apr 2021 at 10:00
Thanks very much Mish. It's a shame Urologists and or ED Nurses don't give such information.

Cheers

Bill

User
Posted 02 Apr 2021 at 10:34

Originally Posted by: Online Community Member
Thanks very much Mish. It's a shame Urologists and or ED Nurses don't give such information.

Cheers
Bill

There's actually a lot of wonderful information about, and like you I struggled to find it. I've started a blog at https://www.recoveringman.net/ to share some stories and I invite you and others to visit and add your voices.

Warm regards and best wishes

Mish

 
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